Trusting yourself about your baby's movements - Natasha's story

Natasha gave birth to her baby Harper at 36+6 weeks by emergency c-section, after finding out she had a rare condition called a True Knot. Read about her journey through neonatal care here.

Harper was born at 36+6 weeks by emergency c-section after what was a seemingly perfect pregnancy. My husband and I had visited the hospital the week before with reduced movement but had been told not to panic and were sent away. After a midwife appointment the following week I still wasn’t happy with Harper’s movements so we decided to go to the hospital just to be on the safe side.

The midwife on the delivery suite hooked me up to a monitor and said she would just get a doctor to check the results before letting me go home. The next thing I knew, six people had burst through the door and the doctor shouted to prep me for surgery. It was like something out of a movie and I still don’t think we have ever fully processed what happened that night.

They began prepping me for surgery and my husband began putting on scrubs. Meanwhile, the doctor took another look at the monitor and just screamed, “Move!”. I was whisked away as the nurses explained that there was no time for my husband to be at the birth and I would have to have a general anaesthetic and be put to sleep.

When I came round, Harper was placed in my arms weighing just 4lb 4oz. She was then whisked away to the neonatal intensive care unit (NICU) and I didn’t see her again for 12 hours. The doctors later told us that if we hadn't gone to the hospital with suspected reduced movements then Harper wouldn't be here as her body had rapidly been shutting down for some time. Had we been 30 minutes later she could have died. They discovered during the c-section that Harper had tied a knot in her cord, somewhere in the third trimester. There was a one in 40,000 chance of this happening and it is called a True Knot. Had I given birth naturally the cord would have split and Harper would not be here today.

She was in NICU for a total of seven weeks due to severe hypoglycaemia and hyperinsulinism and we were told she was only the second baby to have this condition in 15 years in East Anglia. Her blood sugar reading on arrival into NICU was unreadable it was so low. Whilst in NICU she had so many different procedures including blood transfusions, cannulas, long lines, different medication and steroid blood testing. She also had blood sugar heel pricks every hour – you can still see the scars on her little heels now. She had to pass various fasting tests and had to be supplemented on a high calorie infant formula to help her gain weight as she had dropped to 4lb days after the birth. She is still under consultant care at Norfolk and Norwich University Hospital and she is also under the care of Great Ormond Street Hospital for her hypoglycaemia where she had a three day stay in January.

A head scan on her last day in NICU revealed cysts on her brain and a later MRI scan has shown she now has multiple cysts on her brain - this and the hypoglycaemia were caused due to lack of oxygen when she tied the knot. The cysts caused part of her brain not to form and we have now been told she has hypermobility and spastic quadriplegic cerebral palsy. She will more than likely need splints or a wheelchair and will probably never walk unaided. She cannot sit properly, crawl or stand. She only began rolling at 11 months on her good side and she rolled four times on her bad side. Her forefingers and hands are stiff and sometimes do not open properly so she is unable to feed herself or hold things perhaps as well as other babies her age.

She has weekly hydrotherapy lessons, physiotherapy, occupational therapy, eye clinic, portage and sensory home visits. We used the Bliss services extensively whilst in NICU for many different things and I now go to a Bliss support group every fortnight which is run by a Bliss volunteer who has helped us from day one especially with things like forms.

Before our experience we had never even heard of NICU - now it has been our whole life for just over a year. We feel as though it is all we know and normal life is just alien to us. For seven weeks we sat by Harper’s bedside for up to 18 hours a day, praying, wishing, hoping, watching, searching for answers as to why this was happening to her and to us. We would watch her little body just lying there with all her wires and needles sticking out of her and just will her to get better.

Becoming a new parent is daunting enough let alone in the circumstances we faced and especially as her birth had all happened so quickly. You don’t know how to process everything at first. Trying to be parents to a NICU baby was extremely hard – we weren’t able to do her first nappy as I had been recovering from my c-section, we had to ask permission to hold her, we could only place a finger on her and not stroke her as premature baby’s skin is extremely delicate, we didn’t do her first feed and we didn’t dress her for the first time - all the firsts you just take for granted with a normal healthy baby.

Throughout our stay in NICU, monitors were beeping all around us constantly and we felt so overwhelmed by all the doctors, nurses, tubes, wires, medications, other families and babies. I was discharged from the hospital after five days and that night, having to leave without Harper, honestly broke me. I still feel as though it was one of the worst things I will ever experience. I almost collapsed in the car park and felt as though I would never breathe again. Having to leave your baby every night is something you just can’t prepare for.

Whilst we were in NICU we experienced so many feelings of emptiness, grief, shock, disbelief, massive highs and horrific lows. For every good piece of news you could guarantee that later that day there would be a complication or something bad would arise. We learnt to celebrate our own firsts and milestones in our own way. The first day Harper ever felt sunshine on her face was massive for us after she was moved to a bay by the window to recover from one of her blood transfusions. The doctors, nurses and other families became our friends and family and having them all there made our NICU journey that little bit more bearable – we would often compare stories washing bottles in the milk kitchen.

We went to visit the NICU on Harper’s first birthday. It was incredibly hard - even walking down the corridor brought back so many memories as did when they opened the doors and the smell and sounds of the monitors hit us. Even the familiar sight of the hand sanitisers and doctors on their ward rounds brought everything back. That being said, it was so lovely to see Harper’s favourite nurse who had been with her since day one, the doctor who discharged her and her current neonatal consultant. The fact we were able to take her home again on her birthday like we should have been able to do on that day a year ago gave us a little bit of closure.

We now look back on our time in NICU as life changing and eye opening, entering us forever into an unknown world, a secret club. The doctors and nurses are amazing, the families have such strength and all the babies are the most humbling little fighters. Both my husband and I developed PTSD and still have horrible flashbacks but hopefully in time we will learn to manage the pain. NICU has made us appreciate Harper that little bit more and made us realise that even miracles take a little time.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages

If you would like to share your story with Bliss, please fill in our online form